[erz1]

Hi,
I've never joined a support group before, don't quite know what to expect but have been living with trigeminal neuropathy from dental work, for 6 excruciating years now. I see a lot of emails about neuralgia, but not neuropathy: constant intense burning above my lip brought on by a needle to the mouth.

No need to say what a struggle to go on. I don't do well with meds--acupuncture helps n a bit, sometimes. I don't want to be discouraged from living-- am a single parent (my kids have no other family), a writer and a teacher. Don't want to be another statistic associated with this condition. If anyone else has had relief, please share what worked. I'm looking into magnet therapy, which I was told might help. Also, lowering oxolate intake. Thanks

Elyse

[EE03]

Originally Posted by erz1

Hi,
I've never joined a support group before, don't quite know what to expect but have been living with trigeminal neuropathy from dental work, for 6 excruciating years now. I see a lot of emails about neuralgia, but not neuropathy: constant intense burning above my lip brought on by a needle to the mouth.

No need to say what a struggle to go on. I don't do well with meds--acupuncture helps n a bit, sometimes. I don't want to be discouraged from living-- am a single parent (my kids have no other family), a writer and a teacher. Don't want to be another statistic associated with this condition. If anyone else has had relief, please share what worked. I'm looking into magnet therapy, which I was told might help. Also, lowering oxolate intake. Thanks

Elyse

I'm not a medical type, but I think that neuropathy refers to damaged nerves while neuralgia refers to pain from misfiring or overactive nerves, at least this is what I've learned from reading about TN. Hopefully someone will come along and clarify this info for me where needed. Regardless of what its called, you have facial pain and you're totally welcome here, although we're always sorry to welcome new folks to this group. I wish I never knew what facial pain was and I wish the same for everyone here. There is a lot of good information(and people here) and if you read through the forums, you'll find posts about what others have found that works for them. I'm on medication, but not the typical anticonvulsants used for this type of pain. I can't tolerate a lot of those medications. I do use mindfulness meditation to cope with the constant pain. You can find books and CD's on this at the library. The author I started with is Jon Kabat-Zinn. He conducted a study at Mass General using these techniques with chronic pain patients. Its a coping strategy that I use all the time and I feel its worth practicing, but it does take practice to use it effectively. I have read of others who have found some relief using a TENS unit, but I don't have any personal experience with that. Hopefully others will see your message and post their experiences as well. Take care and make yourself at home, EE.

[booklass]

Hi, Elyse, I don't think I will be of much help because I am new to this whole TN thing. However, from my research, it seems you will find Neuralgia and Neuropathy are sometimes interchangeable when it comes to Trigeminal Neuralgia. Type 2 TN is sometimes called neuropathy more ofte. I don't know why that is. As for relief? Well, I am still searching. I just started Lyrica last night. No idea how I will do with that. Trying to find time to rest for a bit in the middle of the day does seem to help me, as do ice packs. I have heard some people say heat helps them more. I have not tried that yet. As a single mum, you probably don't get a lot of/or any time to rest, but if you can, try to. Some people find that strong smelling or spiced foods will trigger an episode. Others feel that a low fat diet gives relief....perhaps those are the MS patients, though. What about massage? I wondered if that would help?

[kidgie]

Originally Posted by erz1

Hi,
I've never joined a support group before, don't quite know what to expect but have been living with trigeminal neuropathy from dental work, for 6 excruciating years now. I see a lot of emails about neuralgia, but not neuropathy: constant intense burning above my lip brought on by a needle to the mouth.

No need to say what a struggle to go on. I don't do well with meds--acupuncture helps n a bit, sometimes. I don't want to be discouraged from living-- am a single parent (my kids have no other family), a writer and a teacher. Don't want to be another statistic associated with this condition. If anyone else has had relief, please share what worked. I'm looking into magnet therapy, which I was told might help. Also, lowering oxolate intake. Thanks

Elyse

Hi,

Ive been in misery since a root canal procedure done in Jan.
I dont have intense pain but alot of facial pressure tightness. I do feel burning and prickly on my cheeks , ears , nose if I dont take a benzo for the day. I had an eeg and it was abnormal on one part of the brain . Im sure its on my left side. First neurologist thought it was trigiminal neuropathy from an injection that caused an anxiety reaction however he said it would probably go away but that was four months ago. Second wanted to put me on Keppra but refuse to take it if they dont have diagnoses. Keppra is usually for seizures and did not have a seizure. Terrified that it might turn to AD or its a mild form right now. I take zoloft because Im anxiety prone but seems to inflame my face more which i dont understand. Terrified because I dont do well with meds either, it lowers my blood pressure. Took it for 8 months five years ago for anxiety but dont remember if my blood pressure returned back to normal. Also, my nasal cavity is dried out, not sure due to all the antibiotics, steroids and anxiety meds I took. this is very fustrating because its hard to breathe through my nose. Very exhausted and confused. I will probably go to another neurologist.

[lalaleeb]

Hi, I had oral surg back in 2005 on my left side. For all these years I never chewed on that side of my face because I was told I had Trigeminal Neuralgia. By not chewing on that side of my face I kept it under for the most part complete control. Until Dec 2012. I started having pain on my right side and I thought I better get to the dentist and find out whats going on. They told me both of my upper teeth on the right side needed to come out. So I had them removed. Little did I know I would experience the most intense pain of my life. All the pain on the left side came back and now I have pain not only on the left (mostly the left) but also on the right. I have nerves in my face that constantly jump and I am in so much pain I have considered suicide to end all of this. My doctor sent me to a neurologist who has put me on neurotin 600mg 3x a day and it is not even touching the pain. I have tried Cymbalta as well but had a very horrible reaction to it. My neurologist sent me to a facial pain expert and he now is saying that he thinks that my jaw may be out of line causing this extreme pain. He is fitting me for mouth pieces that I have to wear during day and a different one at night. I am very skeptical of this. I have had this pain for years now on and off and since the procedure in dec constantly. I have been told so many different things I don't believe anything they say anymore. My neurologist said I don't have trigeminal neuralgia that I have trigeminal neuropathy. This facial pain dr says he thinks its all my jaw. I am at a loss. I am in constant pain my teeth are so numb I cant even stand for them to touch. My face on the left side is so tight with gripping pain I feel like Im losing my mind. I'm looking for advice. Should I let this facial dr make these things that are costing me thousands of dollars? Or Do my symptoms go along with what my neurologist is saying? Please help me I am desparate! Thank you

[jjlsongbird]

Originally Posted by kidgie

Hi,

Second wanted to put me on Keppra but refuse to take it if they dont have diagnoses. Keppra is usually for seizures and did not have a seizure.

Trying anti-seizure meds is often the way doctors get a firm diagnosis for TN. I don't know if it would work for you but if you are not getting relief, I'd say try whatever you can.